This blog used to be a place for me to share insights into my mental health: mostly as an outlet (as with anything I write, design or compose, I'm usually fearful of sharing in case people think it's crap!). After moving a few posts over from an older blog that covered more topics, I then didn't manage to keep writing: mostly because of the very issues I might have been writing about.
Since then, I've been diagnosed as autistic. To cut a long story short, we were looking into the possibility that our son might be autistic when it dawned on me that I probably was. Inspired by lots of autistic bloggers and podcasters who often say the find it helpful to talk about their experiences, I started doing the same. I find it hard to record podcasts or videos because I'm embarrassed and need time when I'm alone in the house and don't have too much work to do! So I thought maybe I'd start sharing some of the same content here for people who prefer to read rather than listen.
This post is an introductory overview of my thoughts on working with autism. I probably also have ADHD - not diagnosed yet. I think a lot of these points will probably resonate with people who are not autistic but are otherwise neurodivergent.
I may use wheelchair users as a reference point: I am not out to compare the difficulties I face with the difficulties a wheelchair user faces; I just feel that it helps when trying to define our intentions when it comes to inclusivity - and I hastily add now, and continue to suggest that I think we have a very very long way to go on inclusivity of all forms.
To start with, I have some statistics which I’ve gathered from a range of autism charity websites including the autistic society and Autistica.
On average, life expectancy for autistic people is 16 years lower than non-autistic people.
80% of autistic people experience mental health problems compared with 30% in the general population
60% of autistic people have considered suicide and autistic adults with no learning Disability are 9 times more likely to die by suicide than the general population
Historically, studies of the IQ of people with diagnosed autism showed that 44% were of average or above average “intelligence”: so 6% lower than the general population. However, recent studies in the US which incorporated behavioural assessments found that 59% of people who fit an inclusive definition of autism, showed average or above average intelligence.
In the UK, just 22% of diagnosed autistic people are in any kind of paid employment. We are often unemployed or underemployed - either only working part time or doing a job that is less than we are capable of. I’d like to point out that these terms are not mine and will be reflective of pay or status rather than societal value, skill or potential job satisfaction. Nevertheless, if autistic people are paid less, that is also a concern.
Personally, I don't like the term "raising awareness" when we are talking about things that people are aware of. For me, I’d rather aim to "improve understanding". People know about autism, ADHD and other neurodiversities but don't always understand how the workplace can affect their neurodivergent colleagues. Notice how I worded that: how the workplace can affect neurodivergent people. I subscribe to the social model of disability. Many people recognised as having a disability believe that it is our environments which are disabling to us. The obvious example is wheelchair users and stairs. If buildings weren't designed with stairs, we wouldn’t need to make “adjustments” to "accommodate" people's requirements: everyone would use the ramps and lifts provided. Another example would be for someone with a hearing impairment. I’m providing the full script on the screen here and actually, when receiving information, I prefer it to be written down because my autism affects my ability to absorb what someone is saying: I can make notes but if the spoken details aren’t clear and in the right order, my notes won’t help me. It’s useful to have it written down anyway and as I’ve written this script to try to make sure I don’t ramble and forget what I was hoping to say, it’s no effort for me to share it.
Some weeks before I received my autism diagnosis, the topic of “reasonable adjustments” came up at work. At present, in most workplaces, those adjustments might be, for example, providing noise cancelling headphones, or moving to a quieter office. Those sorts of things might help a bit. But to me, whilst I am affected more by noise and distracting workspaces than most people, they are not the biggest problems I face at work. The biggest issues I have are built in to our systems, processes and methods and indeed the very culture within our workplaces. Systems that don't quite work how they should, so have workarounds bolted onto them. Processes that have to be done in ways that seem illogical to me. Having fundamentally different ways of arriving at the same outcome simply because merging the two would take resources that are always deployed elsewhere. My brain can sometimes see big, logical alternatives to the frustrating methods we employ and the sometimes insurmountable obstacles we create that would benefit neurotypical staff as well as people like me. Although I’ve mentioned some of these ideas to plenty of people, I've never been in a position to get anything done.
So instead, I keep trying to manage. But it's exhausting. I’ve had to develop and keep updating an internal emulator to transcode what's in front of me, into something I can begin to comprehend. I also need to translate the unconscious language and unwritten conventions that my colleagues employ and then carefully shape my thoughts and feelings into actions, expressions and language that is deemed to be "professional" and meets neurotypical expectations. And there's one thing left for me to do after that….I've also got to do the work.
To an extent, I can do it. For years, I was managing, I think, to handle all of this and complete as much or more work as my neurotypical colleagues to the same or even higher standards. But when I became a parent, my downtime more or less vanished: evenings, weekends and holidays weren’t just about relaxing or doing things I enjoyed anymore. It wasn't long after my son was born that things started to feel much more difficult at work. I was becoming more tired and more anxious. The anxiety and exhaustion made a severe dent in my ability to focus. As I kept on pushing through, it got worse. I put it down to the anxiety and depression I've suffered with all my life and I broke the habit of a lifetime and started taking medication. It helped a bit. Then, my employer decided they wouldn’t be extending my contract and I had six months of extreme worry about my future and our family's finances, followed by having to apply for jobs, managing interviews and then when I did get a new job, I had an intense learning curve.
I was struggling to find my feet. I’d started off confidently but that was quickly ebbing away. I didn’t feel like I knew what was happening or how I was expected to work. I didn’t understand some of the things I was trying to work on and when I asked for more guidance on something - which I didn’t like doing - it didn’t always help. I was getting more and more headaches, I could barely focus on anything. I needed to reach out to someone and tell them that I was struggling really badly but I didn’t know who to turn to. I’d been working longer hours, trying to make things make sense. I was stressed and not thinking clearly.
One day, in a team meeting, I mentioned that I’d been working extra hours and this didn’t go down well: apparently I wasn’t meant to use the team meeting to talk about that sort of thing. My line manager had been picking me up on lots of little things and I began to feel like I couldn’t get anything right. That evening, I was still struggling along, trying to force my brain to get through another task, and another. Eventually, with a desktop full of open emails, word documents, spreadsheets and browser tabs, I couldn’t do any more. I remember sitting in the living room and everything had just stopped. All the effort, all the straining to focus and understand had failed: nothing was working; I had ceased to function. I think I was somewhat mute: unable to communicate in sentences. I emailed my line manager to apologise for speaking out of turn and to say that I didn’t understand why I was struggling. It was decided that I should take some sick leave and follow up with some support via my GP that I’d already been waiting for. I was extremely reluctant to take time off sick: I knew that I would be stopping work for a significant period, and not just for a few days. But I knew deep down I couldn’t keep going.
I now realise that I was totally burnt out and that had caused an autistic shutdown.
After listening to me talk about how I was feeling, an Occupational Health advisor suggested I might need as much as a year away from work. I knew that would throw up issues around my job: I didn’t think I’d be on full pay for a period like that and it would pose big questions for me about why I couldn’t cope; what would be any different if I had a year out of work, in fact, wouldn’t I end up more anxious? I was worried I’d lose the capacity for a full time job. So after six weeks off sick, despite knowing I was nowhere near ready to return, I went back to work.
A few weeks later, I was supposed to be having an annual performance review. What happened instead was an hour-long take-down where my line manager made it clear to me that my work was not good enough. Initially I tried to counter some of the criticism but apparently I was just making excuses and the only thing my line manager wanted to hear was solutions. I was shaking, shivering, my head bowed, silently nodding like a naughty but regretful child. I wanted to run away from it all but of course, I couldn’t. I got in touch with my HR advisor, making it clear that I was just seeking advice and not complaining about my line manager. He assured me that he knew and trusted my line manager and so it must be me that was failing. He suggested I look into some of the training offered by my employer: things like mindfulness and resilience. I felt totally dismissed: even insulted. Clearly, no one was going to help, so I took the decision to increase my medication and to work harder and longer to meet the expectations that were placed on me. My confidence was utterly in tatters, my physical and mental health in a rapid decline: but I didn’t have a choice; I had to keep working. I needed a job that suited me better but I was barely coping with what I had in front of me so there was no way I could find the capacity to start the arduous task of reviewing my career and applying for jobs.
This was summer and early autumn 2021 - and in February 2023 I’m still in this same place. I’m not getting enough exercise because I simply don’t have the energy. I’m still taking medication to help me cope with work: I don’t otherwise need to take it, indeed the side effects have an impact on my life, making me feel emotionally flat and lethargic.
I feel it’s important to add that apart from when I was off sick with stress, nothing has actually gone wrong with my work. Everything has been achieved, in fact I’ve received positive feedback and genuine thanks for my efforts, including gifts from colleagues and a thank you letter and gift from the former head of the civil service for some work I’d done on a project he chaired. I reinvented myself in my 30s after my original career collapsed during the financial crash and I worked extremely hard to move from an entry-level admin temp in 2010 to Administrative Officer, Administrative Manager and then Institute Manager in 2016. I’m very hard working, I’m intelligent, I’m a creative big-thinker, I’ve been an adept problem-solver, reliable and honest. My autistic and ADHD brain has been one of the reasons behind my successes…but I’ve reached a point where I have to consider whether I can continue to manage processes and methods which simply don’t make sense to me.
Our brains are wired differently - that can manifest itself in different ways and cause different issues depending on the person and their working environment - which includes not only physical spaces but also processes, methods, relationships and culture. But for me:
I’m really uncomfortable in meetings. Even if I like the person I'm meeting with: and I like most of the people I've worked with over the last ten years! But they make me so anxious. Interacting with neurotypical people has always been hard for me. People who know me might be surprised to hear this: but it's all an act. I don't even know who I really am. I have to fake everything, otherwise I'll come across as abrupt, blunt, even rude. I would rather be completely open and extremely honest: if something is rubbish, I'll want to say so.
Here’s an example greeting:
"Hi, how are you?"
Reality: "Well, I found it hard to sleep last night worrying about work, and I woke up with a stiff neck and back. And I’m worried about my son: he’s clearly anxious about something but he won’t talk to us. And my contract expires in a few months and applying for jobs and learning new jobs is a really horrible experience for me but I need to pay the bills. We need to find the money for my wife to get root canal surgery. I’m not getting any exercise because I’m too stressed and tired and my clothes aren’t fitting me anymore and I’m halfway to 90 and really worried about my physical health. And I keep forgetting to ring my Dad. And we’ve got that mould problem in the house again and there’s a smell too: I think a bird has died and fallen down the chimney. And we’re supposed to see some friends this weekend but I don’t feel up to it and one of them has some wrongheaded opinions that I want to argue with them about."
Of course, I don’t say that. What I actually say is: "I'm good, thanks, how are you?"
Here’s an example question:
"How did the event go?"
Reality: "My previous meeting overran and I didn’t have time to go to the toilet so I was uncomfortable the whole way through the event. It was pouring with rain and I got wet feet on my way to the venue. Then the speaker really wanted to use their laptop, only the HDMI connection was no good and we lost 10 minutes at the start trying to sort it out. I also had to tidy the room before we started but I might as well not have bothered because of the 60 people who registered, only 20 attended and 15 of those were online. Then my laptop crashed and we lost the zoom connection…"
My actual answer: "It was really good, yeah."
Unexpected changes to priorities are really hard for me and they happen CONSTANTLY. My brain maps things out in a logical order but our systems don’t always work that way. Often we actually have to make sure one part of a task is done first before we can start something that logically comes before it, and my brain does its best to reject that. Some things I need to do involve doing something one way and then going back to edit it, rather than just doing it correctly the first time. It causes me enormous frustration, every time.
Insecure work makes me really anxious. I’m always trying so hard to do my job well and it takes so much effort to start to feel vaguely comfortable with the role and the people I work with that I don’t want to be forced to leave. But I haven’t had a permanent role since 2014 and I had to leave that one because I needed more money to buy a house before my son was born.
There are sensory issues. All office lighting is too bright for me, but I’m in a shared office and most people find the light coming through the windows is inadequate. Then there are people standing outside the office talking noisily. There’s always construction work going on. I have to speak to strangers if I want a coffee that doesn’t taste like hot mud and sometimes, there’s no decaf, or no oat milk, or they put that really sweet oat milk in. For some reason, the wall next to my desk vibrates really loudly and noise cancelling headphones don’t work for that. When other people in the office are at a comfortable temperature, I’m too hot. I don’t like public transport: it’s not very clean or reliable and I have to stand or sit too close to other people. I can’t drive, though, so I have no choice (to my brain, everything is a hazard and although I can actually handle the vehicle perfectly well, it doesn’t feel natural to pilot 2 tonnes of steel and plastic around a built up area). I could cycle but there’s no cycling provision and I don’t trust rush hour drivers. I like walking but it would take me two and a half hours.
I think this is a really difficult time for neurodivergent people at work. Employment is insecure. A lot of people are self-employed which is more stressful because you have to do extra work, such as selling yourself to prospective clients, filling in tax returns, you probably need insurance, you need to budget for possible sick leave, set up a pension, chase up unpaid invoices, maintain things you need for work, like your car or IT equipment… Employers are often under pressure too and although they may want or even need to support staff for whom the environment causes great difficulties, all they tend to offer is training sessions in coping and resilience. They wouldn’t train a wheelchair user to drag themselves up the stairs.
I’ll put it plainly: I have been working full time since I was 21 years old. Before that I worked part time and was in full time education. I know how to cope: but I have limits. Limits that won’t be extended by someone showing me yet another way to organise myself, or how to take notes.
So please, employers, take note: trying to “fix” neurodivergent people will not make your workplace inclusive.
No comments:
Post a Comment